‘Years of GPs dismissing me with UTI after UTI’: life and love with interstitial cystitis

Guest post by Kelly Nolan

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KellyAlthough I’ve only slept with a few people, my best friend always jokes that I’ve had more sex than him because I was in a relationship for 9 years – and he’s probably right. But within a year of being with my long-term boyfriend, I remember feeling poorly. I was constantly running off to the toilet, as I desperately needed to pee, but nothing would come out. If it did, it would be followed by a serious burning and sometimes… blood.

Now, when you Google bloody or burning pee, obviously the search results would have you believe you are on the verge of death – but I held my nerve and got a doctor’s appointment within a few days. By the time I explained my situation to a GP, the effects had almost gone and I felt so over it. They suspected a urinary tract infection and gave me some antibiotics: “Seven days on this and you will be fine” – and they were right… until the next time, and the next time, and the next.

Up until university I had always discussed my health concerns with my mum and, although she was at the other end of the phone, I didn’t feel like I could anymore. I definitely didn’t want to explain something so personal to my new boyfriend, especially while we were still in the honeymoon period. I didn’t want to say: “Oh, by the way, my vagina is on fire and I am in serious pain but it’s a condition you can’t see so you’ll just have to trust me”, even though that’s probably exactly what I should have just come out and said. Just FYI, if you do manage to pee, it is commonly described as pissing razor blades.

I remember with one bad bout, lying on the couch in my student house and having to really, really, really, really, really find the strength to get off the couch to go to an important lecture. But what was the point when all you can concentrate on is the feeling you are going to piss yourself, even though you aren’t? I remember putting a cold beer bottle in between my legs one day. Even though the condition is internal, I was just so desperate to make the pain go away that I’d try anything!

I struggled on with UTI after UTI, and constant doctors’ visits – because of course, you can’t get the only recommended treatment on repeat prescription unless you reeeeeally beg! I was convinced this wasn’t normal. It was 2007/8, before smart phones, and I didn’t have internet in my university halls or house so, embarrassingly, I ended up doing my research on the library computers. A word popped up, cystitis. I mean, how do you even pronounce that?

“Cystitis is an inflammation of the bladder… In most cases, the cause of cystitis is a urinary tract infection (UTI). A UTI happens when bacteria enter the bladder or urethra and begin to multiply. This could also happen with naturally occurring bacteria in your body that become imbalanced. These bacteria lead to an infection and cause inflammation”, healthline.com informed me.

After tons of reading, one term kept popping up that made my heart sink: sexual or honeymoon cystitis. “Honeymoon cystitis (or “honeymoon disease”) is cystitis caused by sexual activity”, said zavamed.com. I read how some women were damaged by it so much they had to have their bowels replaced. Reading that, as a 21-year-old, I cried under my breath at the computer. That was no way to live your life. I felt like i was being punished for wanting to be with my boyfriend. I’d never had this problem with my previous boyfriend, so I just felt so lost and confused.

I already had an appointment with my doctor the next day anyway, and I was back home in my hometown, so weirdly felt  more comfortable even though it was a male GP. I felt fragile and remember whispering through tears: “I think I have cystitis”. He spoke softly to me and asked, “do you get it after sex?” I responded yes, and we launched into a calm-inducing conversation about honeymoon cystitis. Having a doctor say the C word back to me took a huge weight off my shoulders. He wasn’t trying to push me onto UTI medication. He asked what I had been put on previously, and explained he would prescribe something else, nitrofurantoin. It changed my life.

Although I would still get bouts of cystitis, this drug was a godsend – and, slowly but surely, it stopped happening. This was, however, thanks to combining the treatment with an embarrassing routine that’s detailed in The Patient’s Encyclopaedia of Urinary Tract Infection, Sexual Cystitis and Interstitial Cystitis by Angela Kilmartin. There are many a great read in this book but (and this is too much information) the routine I now have to follow is making sure I urinate and cover my lady parts in lukewarm water straight away after being intimate with someone.

My boyfriend at the time got used to it, but it does affect your mental health when you can’t lie there and relax post-coital because you’re immediately worrying about whether you’ll get an infection. It makes you feel weird, unnatural, but it’s a necessity.

The mental health issues didn’t stop there. If I did get an infection I would get so mad at him, as if it was his fault, which led to fights. It makes you scared to have sex, which inevitably affects your relationship. It makes you scared to go to the toilet due to all the previous occasions when you’ve sat there for 20 minutes and the only liquid coming out was tears. It makes you feel unsexy. No one in the movies or on TV rushes off as soon as sex is all finished!

I have the chronic form of cystitis, known as interstitial cystitis, and you have to stay mentally strong as a long-term sufferer. I suffered years of GPs dismissing me, and ironically it was the one male GP I eventually saw who actually showed me some sympathy. It’s hard to describe the sadness you feel when you manage to open up about it to girls, even my mum. I’ll say I’m struggling with cystitis and they respond with “ooh yeah, I had that once.” Once? Once! I remember my ex-boyfriend called one day to say he had a UTI. “What is this shit, it’s so painful,” he said – but, instead of retaliating with “yep, try having that at least 50 times over the past 8 years”, I supported him through it and explained what would help because I felt his pain.

You really cannot understand this condition until you have had it. Some studies have linked recurrent cystitis with feelings of depression and suicide; I’ve certainly edged close to the latter. I used to feel so run down, but that’s the killer with IC – you can get it just because you’re run down, as I found out on the second day of a very stressful job, when it just appeared out of nowhere.

But things have changed and, like I said, I manage it better. These days I normally only get symptoms if I am too dehydrated. Just the other day, I had a binge on the new Netflix series You, where character Peach Salinger mentions the condition! I was gobsmacked; no one talks about it in films, TV, or the media, except for an article from Lesley Garrett, which I keep bookmarked. She also describes the weird amount of water we drink during a bout to flush out the bacteria both physically and psychologically.

Thankfully it’s been a year, maybe two, since my last flair up, but I am never safe from it, and wouldn’t wish it on my worst enemy. It sounds corny as hell but I always write in my gratitude journal “didn’t get cystitis”, because I am truly grateful when I don’t.

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